It is finally here. The Van Iwaarden clan always (except for an interruption for surgery 2 years ago) takes a ski trip to Copper Mountain, renting a condo somewhere close to the resort. We generally ski up until Thanksgiving day, enjoying the lack of crowds in the early week and then get a wonderful dinner cooked by my personal chef, Stephanie Van Iwaarden. Stephanie is usually limited by the mystery kitchen, appliances, and cookware but always pulls together a meal that is awesome.
I have been particularly worried about this ski season. Our last day skiing in the 13/14 season was our traditional closing day at Copper Mountain on Easter. The mountain had just gotten a bunch of new snow the night before but the afternoon temperatures were in the upper 40s and lower 50s which turns snow into slop. Skiing these conditions an be tricky because the skis will grab and release almost without warning and the mounds of melting slush are hard to get through.
This was also the Sunday after my last I-131 treatment. I did not have much of an issue with the previous treatment and expected this to be similar. The day was horrible. I had to make 4-5 stops on one of our favorite runs (Copperfields) where we normally finish it in a single stretch or with just one quick break. My legs were dying and my heart felt like it was exploding.
You may remember that, at this time, I knew I had stage 4 kidney disease in addition to the cancer but that was the end of it. What we did not know at the time was that my hemoglobin production was faltering and I had dropped to a hemoglobin level of about 9.5 (17 was normal for me 3 years ago). I also did not know that the mass on my lung had continued to grow collapsing part of my right lung and now was causing an accumulation of pleural effusion, significantly reducing my lung capacity. The combination of all these issues is probably what was leading to my bad day skiing.
So, you can imagine my concern at the start of the 2014/15 season. I did not know if my lungs were going to give out or my legs were going to collapse. I have also been dealing with edema lately which has caused my legs, feet, and ankles to swell considerably. We have treated this with some diuretics (lost 10+ pounds in the first week) but I did not know if my ski boots would even fit.
The ski season has had a slow start but, in the last two weeks, it has dumped almost 5 feet of snow at Copper Mountain and they have now opened a remarkable amount of terrain for Thanksgiving week. We started off with a ride up American Flier and then dropped down into some of our favorite blue runs under Timberline Express.
Our first run was on The Moz which had just been opened today although many had been cutting the lines the previous couple of days. The snow was deep and soft and the old muscle memory kicked in and I glided down the run. There was the familiar feeling of floating on powder with no sounds around but the light whistle of the wind as the skis carve, dive, and surface in the deep snow.
Skiing is on for this year. I am certainly nowhere where I was last year at this time and I know I never will be again but I still can love the feeling of my skis sailing through blankets of snow. We skied Copperfields again with just one stop and I even took the side cut through Tempo which has not grown any real moguls yet.
We flew down Little Burn which was also opened today and enjoyed the smallest bumps that run will have all season. We broke for lunch, relaxed and warmed up and then headed out for a few more runs. Jaques Pique was just opened and we got to enjoy some untracked snow on that trail. Unfortunately, that was also the run that ended my day. I fell in some deep powder and the struggle to get back on my feet finished my legs and my lungs.
The day was wonderful. Seeing my kids bounce and play in the snow and watching my wife float down the runs is something I have never stopped enjoying. My kids are all better than me now and are certainly faster. It is rewarding to see them advance and enjoy the skiing that we have done as a family. I hope it is something that continues with them as they leave home and start their own lives and whatever families or friends they make.
I am back. I am not the skier I once was (Warren Miller said that "If you claim to be a better skier at 40 than you were at 20, you were a pretty bad skier at age 20) but I can still enjoy it. Find your snow this year now matter what form it takes or where you find it!
Monday, November 24, 2014
Saturday, November 1, 2014
Z is for Zebra
This was one of the easiest letters to pick. The Zebra is the mascot for carcinoid cancer because physicians are taught that 'When you hear hoofbeats, think horses, not zebras." This is excellent advice and is an example of Occam's Razor. Essentially, the answer that has the fewest assumptions should be selected.
Carcinoid mimics many other more normal diseases like irritable bowel syndrome, Crohn's disease, stress, gluten intolerance, or any one of number of other diseases. In spite of my misdiagnosis, this is exactly what a doctor should do. You should choose the most likely situation but (and here is where my doctors originally fell short), you also need to keep the zebra in mind when the horses don't materialize.
The misdiagnosis in my first years were not outside of the horse arena as my symptoms were quite minor. In the final months, that is where the zebra should have started making an appearance in my doctor's diagnostic sequences. On the other hand, it is certain that the few months of misdiagnosis would not have lead to any difference in my current situation. However, if it had been caught several years earlier, that diagnosis could have lead to a potential full cure.
But at what cost? The blood test is pricy, nuclear medicine scans are extremely pricy, and neither may have been definitive. This sort of shotgun testing is a significant part of our healthcare cost explosion in the last few years. Doctors order batteries of tests because it is easier to just administer a test and it is safer from a malpractice point of view as well. These tests are often not cheap (CT Scans and MRIs for minor head injuries) but they are a quick and easy way to rule out certain diagnosis and to CYA. Doctors are also not the only ones at fault here as patients demand or expect this tests to be done in order to ease their mind about the possibilities.
We need to get these costs under control. Zebras need to be considered but they need to be addressed further down in the diagnosis tree rather than pushed up to the top. Without getting these costs under control, healthcare is going to continue explode. Whether you like it or not, the Affordable Care Act is attempting to implement some controls that will use the carrot of higher payments for doctors and hospitals to implement more efficient care. This already has proven effective in some areas such as reducing hospital recidivism through follow up care and doctors visits.
Are you a zebra too? Perhaps. Follow the diagnostic tree through the most likely illnesses. If you have a fever, almost certainly,it is flu or a head cold and you don't have ebola. Even malaria or typhus would be a more likely diagnosis than the albino zebra of ebola. Attack the most likely situation first and save the expensive or invasive tests until later. I had this exact situation about 4 months ago when I had persistent low grade fevers (100-101) every evening. We checked the easy, cheap, and higher probability causes and then waited to see if my scheduled stent swap would solve a possible UTI. It did and no more tests were needed.
Doctors need to be given the time to go through proper sequences and then also need to not be punished (sued) for missing the 1 in a million case. Be patient as they try to diagnose you because medical science is not as precise as we would like due to the amazing complexity of our bodies.
Carcinoid mimics many other more normal diseases like irritable bowel syndrome, Crohn's disease, stress, gluten intolerance, or any one of number of other diseases. In spite of my misdiagnosis, this is exactly what a doctor should do. You should choose the most likely situation but (and here is where my doctors originally fell short), you also need to keep the zebra in mind when the horses don't materialize.
The misdiagnosis in my first years were not outside of the horse arena as my symptoms were quite minor. In the final months, that is where the zebra should have started making an appearance in my doctor's diagnostic sequences. On the other hand, it is certain that the few months of misdiagnosis would not have lead to any difference in my current situation. However, if it had been caught several years earlier, that diagnosis could have lead to a potential full cure.
But at what cost? The blood test is pricy, nuclear medicine scans are extremely pricy, and neither may have been definitive. This sort of shotgun testing is a significant part of our healthcare cost explosion in the last few years. Doctors order batteries of tests because it is easier to just administer a test and it is safer from a malpractice point of view as well. These tests are often not cheap (CT Scans and MRIs for minor head injuries) but they are a quick and easy way to rule out certain diagnosis and to CYA. Doctors are also not the only ones at fault here as patients demand or expect this tests to be done in order to ease their mind about the possibilities.
We need to get these costs under control. Zebras need to be considered but they need to be addressed further down in the diagnosis tree rather than pushed up to the top. Without getting these costs under control, healthcare is going to continue explode. Whether you like it or not, the Affordable Care Act is attempting to implement some controls that will use the carrot of higher payments for doctors and hospitals to implement more efficient care. This already has proven effective in some areas such as reducing hospital recidivism through follow up care and doctors visits.
Are you a zebra too? Perhaps. Follow the diagnostic tree through the most likely illnesses. If you have a fever, almost certainly,it is flu or a head cold and you don't have ebola. Even malaria or typhus would be a more likely diagnosis than the albino zebra of ebola. Attack the most likely situation first and save the expensive or invasive tests until later. I had this exact situation about 4 months ago when I had persistent low grade fevers (100-101) every evening. We checked the easy, cheap, and higher probability causes and then waited to see if my scheduled stent swap would solve a possible UTI. It did and no more tests were needed.
Doctors need to be given the time to go through proper sequences and then also need to not be punished (sued) for missing the 1 in a million case. Be patient as they try to diagnose you because medical science is not as precise as we would like due to the amazing complexity of our bodies.
Monday, October 27, 2014
13th anniversary
The evening of October 26th, 2001, I went in for an exploratory laparotomy, unsure of what the results would be but the possibility of cancer was far from my mind. My wife was told after surgery that they removed a tumor and, on the morning of October 27th, 2001, I was informed of the diagnosis. It has been a long 13 years and I have been fortunate in living this long and getting to enjoy so much of my family and friends for these years.
Today, it is 9:45 and I look at the clock as I have a 12:15 outpatient surgery to do a bilateral stent swap. I have done many of these since my first stents were inserted after my 11/2011 surgery and I know mostly what to expect. By mostly, I mean if things go as planned. With each stent swap, there is an increased probability that they will be unsuccessful as the tumors continue to press harder on the ureters.
One of these stent swaps (and it could be today), I could wake up to find out that they were unable to swap one or both of the stents. If this happens, the next step is percutaneous nephrostomy tubes and that is another step that I fear. I know I will learn to live with them and I know that many other people do as well but I fear yet another change.
I don't want to go today. Every surgery looks fine from several weeks out but, on the day of surgery, I start to lose it a bit. I hate getting another IV inserted. I hate having to make sure the anesthesiologist knows how to hand carcinoid syndrome. I hate waiting in the pre-op rooms with my feet getting cold. I hate the feeling of going to sleep and I hate waking up, not knowing whether or not the procedure was successful or not.
Just like every other time, I will go today and I will get the procedure. I will hope for the best possible result but I dread the time in between.
Today, it is 9:45 and I look at the clock as I have a 12:15 outpatient surgery to do a bilateral stent swap. I have done many of these since my first stents were inserted after my 11/2011 surgery and I know mostly what to expect. By mostly, I mean if things go as planned. With each stent swap, there is an increased probability that they will be unsuccessful as the tumors continue to press harder on the ureters.
One of these stent swaps (and it could be today), I could wake up to find out that they were unable to swap one or both of the stents. If this happens, the next step is percutaneous nephrostomy tubes and that is another step that I fear. I know I will learn to live with them and I know that many other people do as well but I fear yet another change.
I don't want to go today. Every surgery looks fine from several weeks out but, on the day of surgery, I start to lose it a bit. I hate getting another IV inserted. I hate having to make sure the anesthesiologist knows how to hand carcinoid syndrome. I hate waiting in the pre-op rooms with my feet getting cold. I hate the feeling of going to sleep and I hate waking up, not knowing whether or not the procedure was successful or not.
Just like every other time, I will go today and I will get the procedure. I will hope for the best possible result but I dread the time in between.
Saturday, October 25, 2014
Y is for Yellow
In spite of his horrible behavior as a human being, Lance Armstrong did a wonderful job starting the livestrong campaign, raising money for cancer research. Yellow is the color of choice for the effort and harkens back to the yellow jersey that is worn by the overall leader of the Tour de France which Lance won, partially due to the drugs he and everyone else were taking. Yellow was actually originally chosen because that was the color of the cover of the magazine that sponsored the original Tour.
I wanted to talk a bit about charity today and the choices that we make. The ice bucket challenge that recently went viral over the internet resulted in a large amount of money for the ALS society. ALS typically gets a relatively small amount of money in charity each year due to the somewhat obscurity of the disease and raised about $19k in all of 2013. The New York Times reported that the ALS Association had received $41.8 million in donations from July 29 until August 31. That is just one month and they got more than twice their total amount from the previous year.
At some point, you need to decide whether a donation is a good use of your funds or not. When it comes to the ALS Association, the money will certainly be put to good use but at some point, they will have more money than they know what to do with and the use of the money will be low. A similar thing happened when the Red Cross received money for the September 11th attacks. They received more money than could be used and planned on saving some money for future incidents so they could react more effectively. This plan was quickly fought by many who donated since they wanted their money to go to September 11th victims.
October is breast cancer awareness month and it raises a great deal of money for breast cancer research. If the desire is to reduce the number of women who die, it would be a far better thing to donate to heart disease research as all cancer in women is second to heart disease when it comes to cause of death. Breast cancer gets quite a bit of attention for many reasons including the stigma that was historically associated with breast cancer and the disfiguration many women suffer in their treatment.
Where have I gotten financial support from some of your donations? If you have given to the american cancer society (60% of money donated goes to services provided), I then have benefited from your generosity through repeated stays at the hope lodge in New Orleans. This service has made our long stays (two weeks or more in the case of my surgeries) much more affordable and tolerable. If you have donated money to carcinoid research, it is fairly likely that little, if any, has benefited me in any way. It is likely that it will help someone in the future who is diagnosed with carcinoid but, due to the long timeline for research, it won't help me.
When you do give money, please look into how that money is handled and how much actually goes to the benefit that you are supporting. Organizations vary greatly in the percentage of money that goes to overhead and the amount that benefits the cause. Numbers can range anywhere from nearly 0% to nearly 100%. The Red Cross, for example, is able to use about 91% of the money that they raise to help people. Feeding America uses 98% of the money they raise to feed people. Children's Charity Fund Inc. gives about 6.1% of their dollars to services it delivers. Naturally, the last one is not high on my list of organizations you should fund. Before you give, take a look at Charity Navigator to find out if your donations will be used wisely.
I wanted to talk a bit about charity today and the choices that we make. The ice bucket challenge that recently went viral over the internet resulted in a large amount of money for the ALS society. ALS typically gets a relatively small amount of money in charity each year due to the somewhat obscurity of the disease and raised about $19k in all of 2013. The New York Times reported that the ALS Association had received $41.8 million in donations from July 29 until August 31. That is just one month and they got more than twice their total amount from the previous year.
At some point, you need to decide whether a donation is a good use of your funds or not. When it comes to the ALS Association, the money will certainly be put to good use but at some point, they will have more money than they know what to do with and the use of the money will be low. A similar thing happened when the Red Cross received money for the September 11th attacks. They received more money than could be used and planned on saving some money for future incidents so they could react more effectively. This plan was quickly fought by many who donated since they wanted their money to go to September 11th victims.
October is breast cancer awareness month and it raises a great deal of money for breast cancer research. If the desire is to reduce the number of women who die, it would be a far better thing to donate to heart disease research as all cancer in women is second to heart disease when it comes to cause of death. Breast cancer gets quite a bit of attention for many reasons including the stigma that was historically associated with breast cancer and the disfiguration many women suffer in their treatment.
Where have I gotten financial support from some of your donations? If you have given to the american cancer society (60% of money donated goes to services provided), I then have benefited from your generosity through repeated stays at the hope lodge in New Orleans. This service has made our long stays (two weeks or more in the case of my surgeries) much more affordable and tolerable. If you have donated money to carcinoid research, it is fairly likely that little, if any, has benefited me in any way. It is likely that it will help someone in the future who is diagnosed with carcinoid but, due to the long timeline for research, it won't help me.
When you do give money, please look into how that money is handled and how much actually goes to the benefit that you are supporting. Organizations vary greatly in the percentage of money that goes to overhead and the amount that benefits the cause. Numbers can range anywhere from nearly 0% to nearly 100%. The Red Cross, for example, is able to use about 91% of the money that they raise to help people. Feeding America uses 98% of the money they raise to feed people. Children's Charity Fund Inc. gives about 6.1% of their dollars to services it delivers. Naturally, the last one is not high on my list of organizations you should fund. Before you give, take a look at Charity Navigator to find out if your donations will be used wisely.
Monday, October 20, 2014
X is for X-ray
Ok, it is an obvious choice but there really aren't many options for X. My wife has read the alphabet mystery novels by Sue Grafton (A is for Alibi, B is for Burgler, ...) and we can't imagine any other choice from her for the letter X either.
For me, X-ray is appropriate. After blood tests, scans of all variety are the only way to really track a cancer. Each type of scan has advantages and disadvantages and every cancer has its preferred scan or sets of scans. There are a number of scans that I have gotten over the years and each works in a different way and provides different information.
X-rays are the some of the first scans that allowed doctors and others to see inside of the body without cutting. X-rays are relatively simple in action. We have all taken a flashlight and shone it through a finger, seeing the glow of the blood and, with bright enough flashlights, a bit of a shadow where the bone lies. That is exactly how an x-ray works. A beam of x-rays are directed through the body and a detector (think photo-sensitive paper), picks up the x-rays that make it through. X-rays go through skin and flesh better than through bone so x-rays are very good at identifying broken bones or the structure of the skeleton.
Computerized Tomography (CT) works similarly except that now the pictures are taken in rapid succession from 360 degrees around the body and then are fused together in a computer. This gives 3d images because then the scans are done in slices along the length of the body. Just like x-rays, the skeleton shows up well and empty spaces (lungs) show up well. Other areas of the body show up as mostly a blob with slight increases or decreases in density because of more or less water in that area. For this reason, scans are generally done using a contrast injected into the veins to give definition. This contrast then acts similar to bone, highlighting critical areas such as liver, tumor and organs.
Two similar scans that Carcinoid patients receive are the Octroscan and an MIBG scan. Both of these operate by tagging a substance with a radioactive marker. The substance used is one that is often taken up by carcinoid tumors (octreotide in the case of octreoscan and a molecule similar to noradrenaline for MIBG), tagged with either indum-111 (octreoscan) or iodine 123 (MIBG). Unlike X-rays, the tumors now become the emitters of the waves (gamma waves) that are detected by cameras that move around the body. Essentially, the tumors suck up the marker and then begin to glow due to the radioactive decay of the tag.
Positive Electron Tomography (PET) scans are not very good for carcinoid in general. These scans usually use a sugar like substance that is tagged with positron emitting radioactive agent. Since carcinoid grows relatively slowly, it does not take up sugars in large amounts and, thus, the tumors do not turn into glowing sources of positrons in the body. There are some recent trials of a new PET scan using Galium-68 but this scan requires an accelerator on location because the half life of GA68 is just 62 minutes. That means that if you started with 100 units of GA68, you would only have 50 units in about an hour, 25 units in 2hrs and 12.5 units in 3hrs, ... Since it decays so fast, the substance needs to be created just before administration of the test.
The final scan is the one I understand the least and is one that many of you have had and that is a Magnetic Resonance Imaging (MRI). MRIs operate by creating extremely strong, alternating magnetic fields that then cause the hydrogen atoms in your body to vibrate and emit radio waves. These waves are detected and, by varying the types and strengths of fields, images can be generated. Similar to a CT scan, contrast is often used since so much of your body is made of water, one sack of water (kidney) is not terribly distinct from another sack of water (liver). Contrast makes the veins glow strongly and this can then give definition to these organs.
Finally, one of the simplest and oldest scanning techniques is the ultrasounds. Ultrasounds work similar to how bats echo-locate. Sound waves are sent into the body and their reflections are detected by the emitter. By calculating the time between the wave being sent and the time it is received, a calculation of the distance can be made and an image is then generated from that calculation. Ultrasounds also can detect doper shift so they can determine what direction fluids (blood in particular) is flowing and its relative speed.
For all the scans you get, you never really know what is going on until the surgeon opens up your body. In 2011, Dr. Boudreaux got a serious surprise as the scans told him nothing of the nightmare that my abdomen was in. They give information but they cannot tell the whole story. The scans are getting better and they can greatly assist diagnosis and treatment but nothing ever is better than actually going for a hands on look.
For me, X-ray is appropriate. After blood tests, scans of all variety are the only way to really track a cancer. Each type of scan has advantages and disadvantages and every cancer has its preferred scan or sets of scans. There are a number of scans that I have gotten over the years and each works in a different way and provides different information.
X-rays are the some of the first scans that allowed doctors and others to see inside of the body without cutting. X-rays are relatively simple in action. We have all taken a flashlight and shone it through a finger, seeing the glow of the blood and, with bright enough flashlights, a bit of a shadow where the bone lies. That is exactly how an x-ray works. A beam of x-rays are directed through the body and a detector (think photo-sensitive paper), picks up the x-rays that make it through. X-rays go through skin and flesh better than through bone so x-rays are very good at identifying broken bones or the structure of the skeleton.
Computerized Tomography (CT) works similarly except that now the pictures are taken in rapid succession from 360 degrees around the body and then are fused together in a computer. This gives 3d images because then the scans are done in slices along the length of the body. Just like x-rays, the skeleton shows up well and empty spaces (lungs) show up well. Other areas of the body show up as mostly a blob with slight increases or decreases in density because of more or less water in that area. For this reason, scans are generally done using a contrast injected into the veins to give definition. This contrast then acts similar to bone, highlighting critical areas such as liver, tumor and organs.
Two similar scans that Carcinoid patients receive are the Octroscan and an MIBG scan. Both of these operate by tagging a substance with a radioactive marker. The substance used is one that is often taken up by carcinoid tumors (octreotide in the case of octreoscan and a molecule similar to noradrenaline for MIBG), tagged with either indum-111 (octreoscan) or iodine 123 (MIBG). Unlike X-rays, the tumors now become the emitters of the waves (gamma waves) that are detected by cameras that move around the body. Essentially, the tumors suck up the marker and then begin to glow due to the radioactive decay of the tag.
Positive Electron Tomography (PET) scans are not very good for carcinoid in general. These scans usually use a sugar like substance that is tagged with positron emitting radioactive agent. Since carcinoid grows relatively slowly, it does not take up sugars in large amounts and, thus, the tumors do not turn into glowing sources of positrons in the body. There are some recent trials of a new PET scan using Galium-68 but this scan requires an accelerator on location because the half life of GA68 is just 62 minutes. That means that if you started with 100 units of GA68, you would only have 50 units in about an hour, 25 units in 2hrs and 12.5 units in 3hrs, ... Since it decays so fast, the substance needs to be created just before administration of the test.
The final scan is the one I understand the least and is one that many of you have had and that is a Magnetic Resonance Imaging (MRI). MRIs operate by creating extremely strong, alternating magnetic fields that then cause the hydrogen atoms in your body to vibrate and emit radio waves. These waves are detected and, by varying the types and strengths of fields, images can be generated. Similar to a CT scan, contrast is often used since so much of your body is made of water, one sack of water (kidney) is not terribly distinct from another sack of water (liver). Contrast makes the veins glow strongly and this can then give definition to these organs.
Finally, one of the simplest and oldest scanning techniques is the ultrasounds. Ultrasounds work similar to how bats echo-locate. Sound waves are sent into the body and their reflections are detected by the emitter. By calculating the time between the wave being sent and the time it is received, a calculation of the distance can be made and an image is then generated from that calculation. Ultrasounds also can detect doper shift so they can determine what direction fluids (blood in particular) is flowing and its relative speed.
For all the scans you get, you never really know what is going on until the surgeon opens up your body. In 2011, Dr. Boudreaux got a serious surprise as the scans told him nothing of the nightmare that my abdomen was in. They give information but they cannot tell the whole story. The scans are getting better and they can greatly assist diagnosis and treatment but nothing ever is better than actually going for a hands on look.
Saturday, October 11, 2014
W is for When
Everyone's life is full of 'when'. When will I get a better job? When will the kids finally move out? When will the kids move out again? When am I going to get recognized. Cancer adds a few more whens.
The biggest one and the one that everyone asks when first diagnosed is 'Will this kill me and, if so, when will I die?' When will I die? There are lots of places on the internet that will allow you to put in various thing like smoking habits, eating, weight, height and will give you an approximate life span based upon standard statistical tables. I occasionally take these polls for kicks and grins just to see what things would be like if I were cancer free and the surveys usually come out with a life span of around 80-85 years.
What is my real life span? It is very hard to say. I got a big fright this summer with the metastases to my right lung but that probably won't kill me. It is likely going to be my liver but that is simply the front runner of things that could be the end. Liver failure does not give any options. The only real cure for liver failure is a liver transplant and I am obviously not high on the list of potential candidates. There are still treatments we can use to address the mets in the liver but, eventually, there just is not much that can be done and that will be an end.
Of course, that is the time we hit the word of the day: When. Last time anyone gave an estimate (about 2 years ago), my liver was about 15% consumed with tumor. I have noticed an increase in carcinoid syndrome, particularly in flushing. This seems to imply that the liver involvement is increasing because those nasty little tumors are dumping their neuro-endocrines directly into my blood stream without the filtering of the kidney or liver. We can't get an estimate of tumor load from a CT scan because of my kidney failure but we may try to get an estimate either through a doppler ultrasound or a CT with contrast once my kidneys have completely failed and I am on dialysis.
Speaking of my kidneys, they will be failing sometime here in the near future but their failure won't lead directly to death. I will quickly start on dialysis and long term dialysis shouldn't be an issue. There will always be the continual low probability chance for infection but that should be manageable and not result in death.
My lungs are another potential critical point. It is likely my liver will go first but if my right lung ever got too critical, it can be removed and I can continue with just my left lung. People do get lung transplants but, again, I am not someone that would be on anyone's list of receiving a transplanted organ.
Another 'when' could come from the continual minor surgeries that I continue to receive. I have a bilateral ureteral stent swap about every 3-4 months. We have not had any issues with the anesthesia that we have been using but there is a possibility of my going into crisis and not recovering, leading to death.
Yet another bowel obstruction is another possibility. I have had 3 so far and if I were to live another 10 years, I would almost certainly have another. If I do obstruct and surgery is an option, a long surgery raises the specter of carcinoid crisis and simply the everyday normal complications of an extended and very involved abdominal surgery. If surgery is not an option, I will almost certainly go back on TPN again. TPN would significantly increase the probability of infection as the path of injection goes directly into my blood system.
What does this all mean? When is when? A study by Dr. Pommier shows that the removal of the primary tumor leads to greatly extended survival, primarily due to delayed onset of liver involvement. In that study, 16 out of 18 of the patients who did not have a primary tumor resected did not survive past 5 years. On the other hand, for those who had primary tumors resected (as I did), there was a 60% survival rate at 15 years. My relative youth also should be a bonus as I was 20 years younger than the average age at diagnosis in Dr. Pommier's study.
When? I don't know but I know it pretty much all depends on my liver as approximately 75% of those who died, died of liver failure. The end of October marks 13 years so I am happily moving into that 60% survival rate group. What I do know is that I will not squander what is remaining. I will not squander an hour doing things that do not matter, are not rewarding, are not fulfilling, or are not memorable. That doesn't mean I won't sit in meetings at work that are boring (there is a price to pay for the others).
What about you? When is when for you? Taking these surveys for my wife yields 90ish years. What time are you squandering or wasting? You never know when a drunk driver, a flash flood, hurricane, tornado, or some other situation far beyond your control will be your when. Enjoy your life and make sure that if your when were to come tomorrow, you will not regret your today.
The biggest one and the one that everyone asks when first diagnosed is 'Will this kill me and, if so, when will I die?' When will I die? There are lots of places on the internet that will allow you to put in various thing like smoking habits, eating, weight, height and will give you an approximate life span based upon standard statistical tables. I occasionally take these polls for kicks and grins just to see what things would be like if I were cancer free and the surveys usually come out with a life span of around 80-85 years.
What is my real life span? It is very hard to say. I got a big fright this summer with the metastases to my right lung but that probably won't kill me. It is likely going to be my liver but that is simply the front runner of things that could be the end. Liver failure does not give any options. The only real cure for liver failure is a liver transplant and I am obviously not high on the list of potential candidates. There are still treatments we can use to address the mets in the liver but, eventually, there just is not much that can be done and that will be an end.
Of course, that is the time we hit the word of the day: When. Last time anyone gave an estimate (about 2 years ago), my liver was about 15% consumed with tumor. I have noticed an increase in carcinoid syndrome, particularly in flushing. This seems to imply that the liver involvement is increasing because those nasty little tumors are dumping their neuro-endocrines directly into my blood stream without the filtering of the kidney or liver. We can't get an estimate of tumor load from a CT scan because of my kidney failure but we may try to get an estimate either through a doppler ultrasound or a CT with contrast once my kidneys have completely failed and I am on dialysis.
Speaking of my kidneys, they will be failing sometime here in the near future but their failure won't lead directly to death. I will quickly start on dialysis and long term dialysis shouldn't be an issue. There will always be the continual low probability chance for infection but that should be manageable and not result in death.
My lungs are another potential critical point. It is likely my liver will go first but if my right lung ever got too critical, it can be removed and I can continue with just my left lung. People do get lung transplants but, again, I am not someone that would be on anyone's list of receiving a transplanted organ.
Another 'when' could come from the continual minor surgeries that I continue to receive. I have a bilateral ureteral stent swap about every 3-4 months. We have not had any issues with the anesthesia that we have been using but there is a possibility of my going into crisis and not recovering, leading to death.
Yet another bowel obstruction is another possibility. I have had 3 so far and if I were to live another 10 years, I would almost certainly have another. If I do obstruct and surgery is an option, a long surgery raises the specter of carcinoid crisis and simply the everyday normal complications of an extended and very involved abdominal surgery. If surgery is not an option, I will almost certainly go back on TPN again. TPN would significantly increase the probability of infection as the path of injection goes directly into my blood system.
What does this all mean? When is when? A study by Dr. Pommier shows that the removal of the primary tumor leads to greatly extended survival, primarily due to delayed onset of liver involvement. In that study, 16 out of 18 of the patients who did not have a primary tumor resected did not survive past 5 years. On the other hand, for those who had primary tumors resected (as I did), there was a 60% survival rate at 15 years. My relative youth also should be a bonus as I was 20 years younger than the average age at diagnosis in Dr. Pommier's study.
When? I don't know but I know it pretty much all depends on my liver as approximately 75% of those who died, died of liver failure. The end of October marks 13 years so I am happily moving into that 60% survival rate group. What I do know is that I will not squander what is remaining. I will not squander an hour doing things that do not matter, are not rewarding, are not fulfilling, or are not memorable. That doesn't mean I won't sit in meetings at work that are boring (there is a price to pay for the others).
What about you? When is when for you? Taking these surveys for my wife yields 90ish years. What time are you squandering or wasting? You never know when a drunk driver, a flash flood, hurricane, tornado, or some other situation far beyond your control will be your when. Enjoy your life and make sure that if your when were to come tomorrow, you will not regret your today.
Saturday, October 4, 2014
V is for Vanity
Vanity. I have never thought of myself as an excessively vain person but my disease has revealed ways in which I have been vain and ways in which vanity is taken from you.
I have never thought of myself as an exceptionally attractive person and have always considered myself to be average. I have been fortunate in that I have not had to have any chemo that would cause me to lose my hair but my body and appearance have been affected in other ways.
I have always been tall and relatively thin at 6' 3" and around 205 pounds. A few months prior to my diagnosis, I 'ballooned' to 220 pounds but the bowel obstruction knocked me back to about 190 pounds. I again returned to just over 200 pounds and hung out there for the next 9 years through repeated surgeries and was happy with my general physical appearance.
The bowel obstruction I suffered in 2011 took me down to 175 pounds prior to the first surgery when I was unable to eat and subsisted on TPN. The next surgery took my weight into the 160s and I have slowly returned to about 175 pounds again. I never was what anyone would have considered to be muscular but the loss of 30 pounds has made me displeased with my general appearance. I feel I appear gaunt and weak now although that is probably more self image than anything else.
I have had several additional things to make me feel unattractive. I received a colostomy with my second surgery in 2011 and it is something that I still struggle with at times. I know everybody poops and I just have a slightly different exit. I manage the day to day issues without any trouble anymore and critical incidents have been mostly eliminated but it is still there and is something of which I am very self conscious.
I also have a AV graft in my left forearm and it looks somewhat bizarre. I truly enjoy the technical aspects of it but tend to hide my arm when I am not wearing long sleeved shirts. I do appreciate the access it will provide for my future dialysis but the oddness of it's appearance and the weird feeling of the blood flowing through it and the 'folding' of the tube when I bend my arm make me uncomfortable.
I have always been proud of what I felt was an above average base level of fitness. I ran my first 5k in late summer of 2010 and had done no running at all that year but still got a respectable (for a first timer) time of 28 minutes. I have always been able to hop on my bike and keep up with average cyclists without much trouble but have never been exceptional. Playing two back to back games of hockey wasn't an issue and even a third was possible at times.
Needless to say, my base level of fitness has been significantly reduced. My hemoglobin has now hit a new high recently of 10.1. That is still 1/3 less than my base level 3 years ago but it is significantly improved from the low of 7.7 I hit 3 months ago. My wife and I took a short hike up Spruce Mountain today and, even though we cut it short at just 4 miles and 600 feet of vertical, I was exhausted at the end. I would love to return to an average level of fitness but that simply is not going to happen again.
Of course, do I need to say anything about hospitals? Hospital gowns and I have spent way too much time together and some of the tests I have received have felt humiliating. I have gotten quite used to life in a hospital and even the gowns have become something that I don't mind too much anymore but the general idea of them is not something I relish.
Future degradations are coming as well. Sometime I am going to get a permanent tap to drain my lungs and that will be a tube hanging out of my side. Sometime, I am probably going to need to get percutaneous nephrostomy tubes and will have those tubes hanging out my back near my waist. Other things are probably coming as well and I am sure that they are not going to be high on the list of fashion accessories.
All this said, I wouldn't change a thing. I pass 13 years post diagnosis at the end of this month and still see several years ahead of me. Each of these things that have taken some of my self image away have been followed up by more years with my wife and kids. I hate my colostomy but, without it, I would die. I hate my AV graft but it will keep me alive. I hate my weakness but love that I can still walk, play hockey, and do some physical activity. I would do them all over again for the years that they have given me. Life is too important to worry about things like vanity.
I have never thought of myself as an exceptionally attractive person and have always considered myself to be average. I have been fortunate in that I have not had to have any chemo that would cause me to lose my hair but my body and appearance have been affected in other ways.
I have always been tall and relatively thin at 6' 3" and around 205 pounds. A few months prior to my diagnosis, I 'ballooned' to 220 pounds but the bowel obstruction knocked me back to about 190 pounds. I again returned to just over 200 pounds and hung out there for the next 9 years through repeated surgeries and was happy with my general physical appearance.
The bowel obstruction I suffered in 2011 took me down to 175 pounds prior to the first surgery when I was unable to eat and subsisted on TPN. The next surgery took my weight into the 160s and I have slowly returned to about 175 pounds again. I never was what anyone would have considered to be muscular but the loss of 30 pounds has made me displeased with my general appearance. I feel I appear gaunt and weak now although that is probably more self image than anything else.
I have had several additional things to make me feel unattractive. I received a colostomy with my second surgery in 2011 and it is something that I still struggle with at times. I know everybody poops and I just have a slightly different exit. I manage the day to day issues without any trouble anymore and critical incidents have been mostly eliminated but it is still there and is something of which I am very self conscious.
I also have a AV graft in my left forearm and it looks somewhat bizarre. I truly enjoy the technical aspects of it but tend to hide my arm when I am not wearing long sleeved shirts. I do appreciate the access it will provide for my future dialysis but the oddness of it's appearance and the weird feeling of the blood flowing through it and the 'folding' of the tube when I bend my arm make me uncomfortable.
I have always been proud of what I felt was an above average base level of fitness. I ran my first 5k in late summer of 2010 and had done no running at all that year but still got a respectable (for a first timer) time of 28 minutes. I have always been able to hop on my bike and keep up with average cyclists without much trouble but have never been exceptional. Playing two back to back games of hockey wasn't an issue and even a third was possible at times.
Needless to say, my base level of fitness has been significantly reduced. My hemoglobin has now hit a new high recently of 10.1. That is still 1/3 less than my base level 3 years ago but it is significantly improved from the low of 7.7 I hit 3 months ago. My wife and I took a short hike up Spruce Mountain today and, even though we cut it short at just 4 miles and 600 feet of vertical, I was exhausted at the end. I would love to return to an average level of fitness but that simply is not going to happen again.
Of course, do I need to say anything about hospitals? Hospital gowns and I have spent way too much time together and some of the tests I have received have felt humiliating. I have gotten quite used to life in a hospital and even the gowns have become something that I don't mind too much anymore but the general idea of them is not something I relish.
Future degradations are coming as well. Sometime I am going to get a permanent tap to drain my lungs and that will be a tube hanging out of my side. Sometime, I am probably going to need to get percutaneous nephrostomy tubes and will have those tubes hanging out my back near my waist. Other things are probably coming as well and I am sure that they are not going to be high on the list of fashion accessories.
All this said, I wouldn't change a thing. I pass 13 years post diagnosis at the end of this month and still see several years ahead of me. Each of these things that have taken some of my self image away have been followed up by more years with my wife and kids. I hate my colostomy but, without it, I would die. I hate my AV graft but it will keep me alive. I hate my weakness but love that I can still walk, play hockey, and do some physical activity. I would do them all over again for the years that they have given me. Life is too important to worry about things like vanity.
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